Wednesday, December 9, 2009

FUNDRAISING UPDATE!!

It has been such a long time since I have updated this blog. We are living in TN, we moved here in August, awaiting the start of the FDA trial for VX-770. Capri has already participated in Part One of the trial and she got one dose of VX-770. We love TN and the doctors here are amazing. A quick update on fundraising. We have about 3 wks left to meet our goal of $200,000. Amazingly we might have met our goal. The Foundation is waiting for a check currently from an amazing man. A amazing women joined us in the fight for Capri and all those with CF and she reached out to her boss and he has made a large contribution to the Foundation. It blows me away the impact just one person can have on the fate of thousands of people's lives. We are still waiting to see the amount donated and the wonderful thing is that whatever he donated will be matched by an oil and gas company in TX. So currently because of the work and prayers and money of every person who has gotten involved and joined me in the fight for my child's life my goal may not only be met but blown out of the water. That is truly a miracle in this economic time. THANK YOU TO EACH AND EVERYONE WHO HAS MADE THIS MIRACLE POSSIBLE!!!

Thursday, June 25, 2009

I have added the CF button on the top right. Just click on that to make a donation to the Cystic Fibrosis Foundation!!GOD IS GOOD!!!! Just a quick update on trial info. Capri had to be able to do two things to get into the trial one was get off her inhaled saline and be OK without it, she has been off a week, #2 was she had to be able to do pulmonary function tests which she has never been able to do, we set it up with her CF doc that she would come in and practice PFT's, today was her 1st practice and she did it on her 1st try!She has done these for close to two years and could not get it down. It is a miracle that she got it today and she did it without practice. The first blow she blew a 93% and then blew the same on the next two blows!!!!! CONSISTENT!!!! The next fundraiser I am doing is give BREATHE FOR A BUCK!! I will give more info out later. I am asking everyone to help fund the cure with just a $1.00 donation!!!Your $1 gets us one step closer to the cure!!It is overwhelming to see miracles happen in the last week that has reassured us that this is what we are supposed to be doing. I feel and see God like I never have before, let me just say that I am thankful for Cystic Fibrosis and you will never be the same after you research this disease and see a glimpse of the people that live with it. There is an undeniable strength and miraculous spirit inside all of those with Cystic Fibrosis. Like I say it is such an ugly horrific disease but those that suffer from CF posses the most beautiful qualities anyone in this world could have. CF is a silent killer and I am asking you to please help spread the word about CF and help fund the cure. I ask you to take 10 minutes out of your week and look on YouTube or google cf blogs and read or view one Cystic Fibrosis story. It will show you a whole different side to a disease few people even know about. It will bless you to see the strength and spirit of someone that suffers from Cystic Fibrosis. IT WILL INSPIRE YOU to help show those with CF that this world cares, that they do matter, and that we will take steps to help them have the simple gift of breath!!!! We take so much for granted in this life, we don't even realize until we see what others endure and they endure it with a smile!! Our next fundraiser fasting Fridays falls two weeks before we may leave for part 1 of the trial. Can anyone say GODS PERFECT TIMING, we will need prayer more than ever. But please pray for all those with CF and those who have lost someone to CF. Some specific names I request you pray for are the Skaggs,Alli, Missy, and Lou! God Bless Each of you.

Monday, June 8, 2009

AS SEEN ON NEWS 9: PURCHASE RAFFLE TICKETS FOR FORD F-150, FLAT SCREEN T.V. OR BLUE RAY PLAYER TO SUPPORT CYSTIC FIBROSIS FOUNDATION

TO BUY RAFFLE TICKETS FOR THE FORD F-150, 46 Inch 1080 HD Flat Panel TV, or SONY BLUE RAY PLAYER YOU MAY EITHER EMAIL ME AT capriscrusaders@yahoo.com and let me know how many tickets and for what items and I can send you the address to mail a check made out to the Cystic Fibrosis Foundation, or you can pay for them directly on the CF website by clicking on this link http://www.cff.org/great_strides/dsp_donationPage.cfm?registeringwalkid=5774&idUser=22179 and then click on the button that says click to donate and make the donation amount to cover the tickets you want to purchase and it lets you leave a comment when you make the donation and write donation for raffle tickets and either way you would prefer to donate be sure and email me and let me know your name, address, and phone number to fill out the tickets and where to send the ticket stubs and a copy of the ticket I filled out for you. TRUCK AND BLUE RAY PLAYER are $2.00 a ticket and the FLAT SCREEN TV are $5.00 a ticket. DRAWING FOR TRUCK IS ON AUGUST 9th at the Del City Ball Park, and drawing for TV and Blue Ray is Sept. 15th. The TV is donated by Oklahoma Office Systems and they will draw for that at their office, and the brand new Blue Ray is donated by my husband and I and we will have Amy Smith pull the winning ticket on the same day as the TV. Thank you for your support in helping fund a cure for Capri and ALL others living with Cystic Fibrosis!!!Nicole Faulk

WAY TO GO TEAM CF, CAPRI FAULK FIGHTING CYSTIC FIBROSIS HOPING FOR CURE FOUND!

FIRST OF ALL THANK YOU SO MUCH TO OKLAHOMA OFFICE SYSTEMS FOR BEING OUR CORPORATE SPONSOR AND TO AMY SMITH FOR HER MOTIVATION AND ORGANIZATION OF FUNDRAISING EVENTS!!! THE GRAND TOTAL RAISED SO FAR? OVER $15,000 DOLLARS, WE CAN DO IT!!! THANKS TO EACH AND EVERY ONE OF YOU FOR STEPPING UP AND JOINING ME IN THE RACE FOR MY DAUGHTER'S LIFE. BE SURE AND CHECK OUT THE LINKS ON THE RIGHT SIDE OF THIS PAGE TO RECENT STORIES ABOUT CAPRI ON NEWS 9.

NEXT FUNDRAISER, FASTING FRIDAYS!! ALSO JOIN US ON FACEBOOK our group is CAPRI'S CRUSADER'S

We are asking Crusaders to sacrifice (1) meal each Friday for the next six months and devote that time instead to prayer, meditation, volunteering, etc. In addition we hope that participants will set the money from the saved meal aside and contribute it to the Cystic Fibrosis foundation. You can do this by accessing the link thru our blog or contacting Nicole or Amy who will collect your money. Our hope is that everyone will contribute on a monthly basis so that we can track our success! If everyone in our current group contributes $20 ($5 each friday) a month from now until December we will have raised over $10,000!!! AMAZING!This event is not meant to make anyone uncomfortable. If you do not wish to fast or contribute money sending a simple thought or prayer our way is appreciated. Fasting Fridays will last for six months-from July 1 until December 18th. Basically by sacrificing approximately 20 meals and 20-30 hours of your time over the next six months you will be making a HUGE difference in Capri's life!Please let us know if you plan to participate so that we may add you to our team roster on our CF homepage. This does not obligate you in anyway but simply allows us to see how many of our friends are participating in this event. Plus we would love for you to share your stories or personal experiences involving the fast. Who's skipping breakfast? Groups getting together to pray at lunchtime? A prayer we can say for you? We want to hear it all! Thanks to everyone and God

Bless~Nicole & Amy

Monday, June 1, 2009

NEED ITEMS DONATED FOR OUR GARAGE SALE, RAFFLE TICKETS FOR SALE

Hey guys, if anyone is doing some spring cleaning we need stuff donated for us to sell at our CF garage sale. It is this weekend and we could come and pick up your stuff or you can drop it off to us at the garage sale. Also we would love for anyone who can to come out and volunteer some of your time to help us run the garage sale. Email me if you can help out in any way. Also just to let everyone know we are selling raffle tickets for a Ford-F150 and a sony blue ray player for $2.00 a ticket and Oklahoma Office Systems has purchased a 46inch plasma TV to raffle for Capri's Crusaders and those are $5.00 a ticket. We are drawing the winner in August for the truck and Sept. for the blue ray and TV. Email me if you are interested in buying raffle tickets and I can mail you the raffle tickets and you can either send a check or pay for them on our cfhomepage at http://www.cff.org/great_strides/dsp_donationPage.cfm?registeringwalkid=5774&idUser=22179 by clicking on the click to donate button. Donate the amount to cover the tickets you want and it lets you leave a comment so put that your donation is for X # of raffle ticktes. Also if you want to help me sell raffle tickets I can mail you some tickets and you can sell them to your family, friends, and co-workers. A quick update on Capri, the trial for the new medication starts this month. Sign up for her age group has not been opened yet, but should be within days. We are going to have to move for a year if she is accepted because Oklahoma is not a trial sight, but we are willing to do whatever it takes. CF is showing its ugly head in Capri's body. It has been hard to see in just the last few months how much the disease has taken over my little girl. We are truly in a race with the clock for her life. Please keep her and our family in your prayers, we need them now more than ever!! God Bless each and everyone of you!!!

Capri’s Crusaders will be hosting a
Cystic Fibrosis Fundraiser!!!
Yard Sale in the
Autumn Ridge
Addition on Covell (between Coltrane & Bryant.)
Saturday June 6th
8am-3pm
Lots of goodies-clothes, furniture, decorative items, electronics, children's items, etc…
All proceeds will go directly to the CF foundation.
**There is a neighborhood sale going on this day so don’t miss out!!!

Friday, May 8, 2009

THANK YOU TO ALL WHO HAVE PRAYED AND DONATED!!!

The big walk day is tomorrow!!! We are very excited and Capri's Crusaders has raised $7227.00 with money still coming in!!! A huge thank you to everyone who has donated and all those that have gotten together fundraisers including; Terri Tetarian, Amy Smith, Dolores Tarman, Sunny Swopes, Heather Loyd, Sundawgs Baseball Team, Jandra Hahne, Andrea Wickman, and a huge thank you to OKLAHOMA OFFICE SYSTEMS and Irene Coffee who have partnered with us as a corporate sponsor. We look forward to working with them over the next year. I still need corporate sponsors so please let me know if your workplace would be interested in doing a easy fundraiser at work!! Capri was also featured on News 9 this week and the link to watch the story is on the right side of this blog. Also a quick update on Capri's health. They have started her on yet another breathing treatment, the alarming part of this is the doctors wait until some bigger signs of lung damage show up before they start them on this new med. At Capri's last appointment he looked over her chart and suggested that she start on this medication because the signs are there that her lungs are getting worse. She is up to three breathing treatments a day with two vest treatments. All five treatments will be everyday for the rest of her life. This news was tough to hear. This year I have had to really face the facts about CF and it does prove that we are in a race against the clock. So thank you from the bottom of my heart to everyone that has prayed or donated. Making a god sized goal has allowed me to see miracles and experience the love and support of God through people. I know I can not do this without God going before me and tugging on the hearts of people to help, and WOW has he ever. I stepped out in faith, knowing this goal will not be met through my power. I CAN'T BUT GOD CAN and HE IS!!! I can honestly say that the scripture on the back of our walk shirts is more real to me than ever "Through grace by faith we rejoice in our sufferings" I would never have experienced the moments I have if it were not for the trails we are going through with Capri. Capri's life is a testimony that God can use and you guys are a testimony to us of God' love and support. THANK YOU!!!

P.S.- REMEMBER WE HAVE UNTIL DEC. 31st AND I STILL NEED YOU!!! WE HAVE ABOUT 30 easy teambuilding fundraisers that you can do in one day at work. Let me know if you are interested. THANK YOU!!

Monday, March 30, 2009

GO TEAM!!!!!!!!!!!!

LET'S GO TEAM CAPRI'S CRUSADERS!!!!!!!!!!!!! WE ALREADY HAVE OVER $6000.00 IN COMMITMENTS AND $435.00 RAISED, AND YES IT IS ONLY WEEK ONE. KEEP UP THE GOOD WORK, WITH GOD ALL THINGS ARE POSSIBLE!!!!!!!!!

Friday, March 13, 2009

WILL YOU TAKE MY CF AND GIVE ME THE GOLDEN TICKET OF LIFE?


Greetings one and all,
I have prayed and prayed about what to say in my letter this year. It has been tough to find the words and I even asked Capri if she would write the letter. HA HA! For all of you who are new to our family we have been blessed with three kids. Cooper is eight, Calli is four, and Capri is six and she has Cystic Fibrosis. CF, as we call it, is a genetic disease for which there is no cure. Cystic Fibrosis is a terminal illness that affects the lungs, pancreas, and liver. 40% of people with this disease only live to the young age of 37.4 or older and the other 60% loose their precious life way before that. When all of these facts apply to the life of your own child they become a lot more than statistics, they become motivation. I write this annual letter to raise money to help fund a cure for CF. I also ask for your prayers that I will never loose my daughter, Capri Faulk, to Cystic Fibrosis.


We are truly in an era where a cure is on the horizon for Cystic Fibrosis. The Cystic Fibrosis Foundation in collaboration with VERTEX, a bio tech corporation, has found a chemical compound that addresses the basic defect for Capri's CF mutation. THIS YEAR IT WILL ENTER THE FINAL PHASES OF TESTING. Did you hear that and truly take it to your heart. They have a medication in trial stages that actually corrects the defect in the cell that causes CF. This medication is considered "A CURE" for this horrific disease. I am crying just writing those words, the emotion and hope that comes over me is overwhelming. The bigger miracle with this promising medication is this: there are over 1500 strands of DNA that cause CF. The strand that this trial medication, VX-770, treats is G551D. For many this is like a foreign language so let me explain with numbers. There are 30,000 Americans with CF and of those 30,000 people only 900 of them have the strand G551D. The medication in trial is only for that particular strand. (900 people) Well Capri Grace Faulk is one of those 900 individuals. Again tears and extreme emotion come over me!!!!!!!!!! This is not only a miraculous year for Capri but a crucial one. Of course in today's economic times with that great hope comes extreme caution. There is no way to get the medication FDA approved without money to fund the trials. We have come so close and we cannot stop now. Time is critical and is the difference between life and death. I will never stop the search for a cure until each and every person in our CF family is cured and I believe it is my time to step up and raise at least $200,000 to help fund life for my daughter. The quote that I received put it best "Sometime in the next 12-24 months it is very possible that we could receive the news that CF is no longer a fatal disease for Capri. With two pills in the morning and two pills at night, her treatment would be drastically simplified and best of all-- she could live a long and healthy life." That is the exact point I am trying to get across to all of you, but when I read that myself it motivates and moves me like nothing else I have ever felt in my life. Just for a second put yourself in the same situation, and add your child's name to the part that says "SOON WE MAY RECEIVE THE NEWS THAT CF IS NO LONGER A FATAL DISEASE FOR (YOUR CHILD'S NAME GOES HERE)" For a moment please just feel the emotions that come with that statement. I just want you to understand why I ask for you to give any amount of money you can, and get involved by sending this on to everyone you know. This is a quote from the company that holds Capri's Cure in their hands "The Cystic Fibrosis drug, VX-770, is being primed for the final stage of clinical trials this year. It represents an opportunity to develop the first oral pill that can affect the underlying protein abnormality that causes the deadly lung disease." THE SCIENCE IS THERE FOR A CURE, THE MONEY IS NOT. SO PLEASE HELP!!!!!!!
Each year around the time of the walk a friend with CF that we have come to know and love seems to be loosing or has lost their battle with this disease. I am never prepared for this and every time a little piece of me goes with them. But truly Capri has been so healthy sometimes I forget how critical and powerful Cystic Fibrosis can be. Unfortunately this year I have witnessed how quickly the disease takes over and sucks life out of the body. You would think the older Capri gets the easier and more accustomed to Cystic Fibrosis would we get, but it is the total opposite. CF is a progressive disease. The older you get the worse you get and this year has been evidence to that. Most people that come across Capri's path have no idea the severity of what this little girl endures on a daily basis. As a mom, witnessing the suffering of my child will never become easier. Capri had a bout with Pseudomonas around Christmas time. To hear the word Pseudomonas for someone with CF is devastating. This germ is attributed to death in 80% of CF patients that get it. It is treated with extremely strong antibiotics and the patient can live for a long time with it but it causes critical damage and over time destroys the lungs. During Capri's bout with Pseudomonas she had the worse cough I have ever seen and was coughing up blood. Her energy was totally gone and she was struggling to breath. WELCOME to CYSTIC FIBROSIS, this is the life she has in store if a cure is not found. Thankfully after a month of treatment she was able to fight the germ off this time.


The picture on my letter this year is different than in the past. My decision was instead of a cute picture of Capri that shows how normal and healthy she looks I would show her reality. This picture paints a portrait of the daily regimen needed to fight this disease. Her normal day includes an hour of vest treatment, an hour of breathing treatment, between 30-40 pills a day, and ten to fifteen medications. On top of all this she deals with the worse tummy aches due to the effect CF has on her digestion. But the most amazing part is that Capri doesn't let any of this stop her from living. Her energy outlasts mine and her siblings everyday of the week. The doctors started her on a new treatment that is a saline therapy. The CF doctors noticed that those people with CF that lived by the ocean had much better lung function, so with money that many of you donated they did trials on inhaling salt water. This therapy proved very beneficial so they now use it for everyday treatment of CF. To put it honestly the saline treatment is hell to watch your child go through, Capri coughs like crazy, gags, and is in extreme pain (the salt water burns both her throat and lungs.) She endures this daily with the best attitude, truthfully most adults could not withstand all she does just to stay alive. Her strength and dedication are gifts from GOD. This girls body may be sick, but her spirit has more life in it than anyone else I know. She is SO SO SO strong and even better yet strong willed. The first day she did this new saline treatment she asked me a question that I will never forget. Her question will motivate me until the day I die to reach out to others for donations to help fund a cure for my little girl and the 30,000 like her. She took the treatment out of her mouth and put it in mine as she was crying and hurting so bad and she asked MOMMY, WILL YOU TAKE MY CF????????????? I looked my child in the eyes and with more hurt than I had ever felt in my life (Even more than the day I found out she had CF, at that time I was hurting, this time my daughter was the one hurting) I had to tell my angel that there was nothing in my life that I wanted more than to take her CF but that I COULD NOT............... With the economy so bad it was so hard to write this letter and ask for money, but it finally hit me one day THIS IS THE ONLY WAY I CAN TELL MY DAUGHTER, YES, I WILL TAKE YOUR CF.
Please help me fund a cure for CF by donating to the Cystic Fibrosis Foundation. Our team walks in the Great Strides Walk each year to raise money for vital research and a CURE. Please make a donation of $15.00 or whatever your budget and your heart allows. I HAVE A TEAM GOAL THIS YEAR OF $200,000 and this is truly a crucial time for the CF Foundation as we are so close to making CF a manageable disease instead of a deadly one. As always your donation is 100% tax deductible. Please view our team website at www.capriscrusaders.blogspot.com, you may click on the donate now part of my blog, or the donate now part of my CF home page, or send a check made out to the Cystic Fibrosis Foundation to Sooner Chapter in care of Capri's Crusaders at: Bethany Bank Tower 3908 N. Peniel Avenue Suite 330 Bethany, OK 73008. This year I am asking you to please forward this email on to all of your friends, family, coworkers, and anyone you know. It literally only takes seconds for them to click on a button to donate any amount they can afford. No amount is to little, every penny counts. The CF Foundation has a lot of ways for corporate sponsors to get involved and we have all kinds of tools to help you if you want to get together your own CF fundraiser at work. Also we would love for anyone who can to come and walk with us on May 9Th at the Botanical Gardens in OKC, OK. You can go to the CF website at www.cff.org or contact Celia Palmer at the CF Foundation with any questions you have, 405-787-0056. I truly need each and everyone of you to help me save my daughter and we will be fundraising until DEC. 31st to reach our goal. Please keep Capri in your prayers for I believe miracles are performed daily through prayer. God Bless You,
P.S.- PLEASE FORWARD THIS TO EVERYONE IN YOUR ADDRESS BOOK, THE ONLY WAY CAPRI'S CRUSADER'S CAN REACH THEIR GOAL IS WITH YOUR HELP. If you are receiving this letter by mail please send an email to everyone you know that contains our web page www.capriscrusaders.blogspot.com and ask them to get involved. Thanks

Nicole Faulk and Family

Thursday, March 5, 2009

WHY?

I just had to post this. Our nightly routine consists of Capri picking something she wants to watch or books to read and her and I sit and do her treatments. For the past six years we have done this and Capri has always just accepted it with very few questions. For the past few months she has had to do the saline breathing treatments as well as her vest treatment. This is the treatment that is so painful to watch her go through but as always she has been a trooper. Last night she had picked out Cat and the Hat to watch and we had gotten her vest started and I was preparing her breathing treatment. She looked at me and started crying and she said mommy I do not want to do that one, she said I use to only do breathing treatments when I had pseudomonas or was sick. I said Capri you have to do this everyday just like your vest. She looked at me with the most devastated look and asked mommy do I have do that when I am 9 years old and I said yes Capri, and she asked do I still have to do that when I am 12 years old, and by now I started thinking and getting overwhelmed too at the thought that yes she would still be doing this gut wrenching treatment in six years, then I answered her with a little more hesitancy and I said yes Capri also when you are twelve, then she said MOMMY WHEN I AM TWENTY I STILL HAVE TO DO THAT, and I carefully said yes as not to break her spirit and overwhelm her, and she said mommy when I am 20 and all my friends are playing I am going to have to go and do this treatment? Here I sat explaining to my six year old that she can only take one day at a time. I said Capri just think of getting through doing it today and together we can get through it today and not worry about getting what tomorrow will bring, I promise you that I will be right by your side everyday doing it with you, you will never go through it alone. I told her this treatment will keep your lungs healthy, she said mommy just get me new lungs. Wow my little girl is growing up and realizing herself what a terminal illness is. I of course am not prepared to have to explain the word terminal to her but she is figuring it out on her own. I didn't quite know how to handle this. I told her that we needed to keep the lungs she already had as healthy as we can for as long as we can. Of course then comes the WHY and I said Capri you will more than likely someday get new lungs, but there is a chance that your body will not accept them. I HAD TO TELL MY LITTLE GIRL THAT HER DISEASE CAN TAKE HER LIFE and that is why we have to do these treatments. I felt like I needed to share this because I have been able to tell others her fate for years and there has not been one year that I have ever read Capri the letter I write to you all to raise money for a cure. I never wanted her to hear the words YOU MIGHT DIE, because I think that steals away the innocence of childhood and I don't want her to fear her disease I want her to fight it. I guess I am trying to share the burden of what happened last night because it is to much to deal with on my own. Capri is so very smart and I don't want her to ever feel different or scared but I want her to know that she must take care of herself to live. That the reason she goes through all this is so that she will be alive at the age of 20. My mom had a good point when I shared this story with her, she said Nicki when they find a cure for this disease then Capri won't have to do that treatment forever. That gave me a lot of hope to look at it that way. God tells us that we have to daily die to ourselves to live, I have gotten a taste of just what that consists of but it is hard for me to accept that my child, as a six year old, has to learn that lesson in another way. That she must daily go through the pain of her treatments to just have a glimmer of a chance to live. Please step in and help me promise my little girl that she does not have to do this painful treatment forever, if we can fund the research for VX-770 her treatment for this disease will only consist of two pills in the morning and two at night. PLEASE DONATE NOW!!!!!!!!!!!

Sunday, March 1, 2009

"THE GOLDEN TICKET" PRESIDENT OF THE CF FOUNDATION READS MY EMAIL

The You Tube Video that is on the bottom of this blog page is the copy of the message the president of the CF Foundation, Bob Beall, sent out as his holiday greeting this year. A few months ago I got an email about the current trial for the medication VX-770, which is the medication that has the potential to save Capri's life. The email I received talked about the success of the medication. As I was reading the email I felt so much emotion and hope and I printed it out to share with my family. Then I sent a quick email to the local CF Foundation Office. My email was to share with them the hope and joy I was feeling and thank them for their hard work to help get us where we are in research. My email touched them so they forwarded it to a CF medication rep, the rep was touched so he forwarded it to his boss, and he was touched so my email kept getting forwarded until it ended up in the hands of the President of the Cystic Fibrosis Foundation. When he received my email he happened to be at the National CF Conference. This is a worldwide conference for all the Cystic Fibrosis doctors, researchers, and scientist. When he read my email the words moved him deeply and he decided to read it to everyone in attendance. He felt it would motivate them to continue in the desperate search for a cure. I was deeply grateful that the short email that I sent my local CF office ended up motivating the people that had my daughters life in their hands. Then right before Christmas during a time that Capri happened to be very sick, I got a call from the Foundation. They asked me if it would be alright if President Bob Beall read my email on You Tube for his holiday greeting. Wow, what an honor. I was blown away to see the effect my words had on this amazing man.
I truly count on you all to step in and help me save the life of my daughter. I wish I had the words to motivate every person reading this to donate any amount they could, for words don't make any difference if no action is taken to change the fate of my child. Please join us in our efforts to give THE GOLDEN TICKET of LIFE to the thousands of people with CF.
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VIEW THE PRESIDENT OF THE CF FOUNDATION READING THE EMAIL I WROTE